When Ceci was 5 years old, she asked me the question I had always dreaded as a CF mom… “When is my cystic fibrosis (CF) going to be cured?” Tears still swell up in my eyes thinking of my sweet little girl. What could be going through her mind to ask me this question? Is she dreading something, or frustrated or scared? “Soon, I hope.”, I answered. I was going to do everything in my power to make that happen.
My name is Maribel and husband, Brock and I are blessed to be parents of two smart, kind, fun-loving girls, Bella, age 12 and Ceci, age 8. Ceci is our little CF fighter. My husband and I are both DF508 carriers, even though we are from different backgrounds! I am Hispanic (both parents from the Dominican Republic) and he is Italian-Irish-and possibly French. I didn’t even know what CF was before being given a pamphlet about when we were pregnant with my first child, Isabella. I honestly didn’t finish reading the pamphlet because it said things like if your child is part of the “lucky” 25%, he or she would on average live to 40 years old.” What?! I threw that thing out! I was pregnant and I wasn’t going to let bad thoughts or worries get into my head if I didn’t need to. – Denial.
When Ceci was born, we were in blissful heaven. She was our second child, so I was much more confident about how to take care of my newborn. I knew her poops were going to change color. I knew babies cried. I breastfed whenever she was hungry. I wasn’t as jittery because I was experienced. Those Luvs commercials are spot on.
But I knew she should’ve weighed a bit more than her birth weight by the 6-week mark, so I questioned the pediatrician about her results from the newborn screening. I figured no news was good news but I was wrong. They had dropped the ball. Something had gone wrong in the lab with her blood sample so they had no answers for me. We needed to get her up to 8 lbs. so they could draw blood from my little one’s tiny arm. I was furious and scared. I worked so hard to get any ounces of weight on my little Ceci and now they wanted to take those precious ounces to perform the newborn screening they should have gotten done with her first sample when she was born! A week later my pediatrician told me she had the markers for CF and now we had to get a sweat test to confirm the diagnosis.
When the sweat test confirmed our fears, we were devastated. My whole body was in shock, thinking the worst, feeling guilty for giving her these faulty genes to make her life harder and definitely grieving our previous ideas for our lives as a family together. I definitely feel like I live with PTSD after having my world altered forever after getting the diagnosis. The diagnosis was definitely a low on this rollercoaster CF life.
Her diagnosis motivated our decisions with much more clarity. My oldest child had gotten sick over and over in daycare, so no matter what it cost, we were not putting her in daycare. When I had to go back to work, I cut my hours back and we hired a nanny. After the first nanny didn’t work out, we were lucky enough to hire our second and most beloved nanny that became like a family member to us. I was basically working for the health benefits because CF is such an expensive disease. Ceci had developed pseudomonas in her little 4-month-old lungs and the inhaled medication, Tobi, was very expensive (in the thousands) and had to be administered 2x per day for 28 days. I remember holding the little fish mask to her face for 26 minutes at a time. We were going to do everything to make sure her life had the best chance to be all it could be.
My CF Clinic team continues to be a high on our CF rollercoaster. Each member of the team answered all my crazy little questions with patience and thoughtfulness. Even though the CF Clinic team was great, I kept asking our Social Worker to connect us parents together so we could learn from each other and support each other. Going online for support was okay but I craved being in the same room with a mom or dad that “got it”. I wished to ask another CF parent their stories and possibly learn from their experiences. Our Social Worker made this happen; he attended and facilitated our support group (for about 6 parents). Unfortunately, we couldn’t get the numbers to increase so they had to stop hosting the support group meetings.
Yet I was fortunate enough that our wonderful Social Worker answered The Cody Dieruf Benefit Foundation’s invitation for CF moms to attend a CF Mother’s Retreat in Montana. Obviously, finances would prohibit many CF moms to attend, myself included, but I was lucky enough to be sponsored by The Donna Crandall Foundation to send myself and 3 other local NY CF moms out to Montana for this special retreat. I had such a good experience at the Mother’s Retreat. We shared, cried and tried to let go. We re-learned we are strong and can advocate. I hope The Cody Dieruf Benefit Foundation continues to empower CF Moms and support them by allowing them to be with other mothers that just “get it”.
After she was diagnosed, we formed a CF Great Strides team for her, named “Cure 4 Ceci”, now called “Ceci’s Superheroes”. My husband Brock became Volunteer of the Year, always being the first one helping at events and the last one to leave. Thankfully due to the research that the CFF has done, she gained weight with the pancreatic enzymes and has fought off several bacterial lung infections with powerful nebulized antibiotics. She does chest vest therapy twice a day to help break up the mucus in her lungs while nebulizing albuterol and hypertonic saline. She takes 38 pills a day to keep her lungs and digestive tract healthy. When our beloved nanny had to leave to study to become a nurse, we chose to have me stay at home with our 3-year-old Ceci. I chose then to become a TA in her preschool because most preschools in NY don’t have a nurse to give her enzymes at snack or lunchtime. I couldn’t keep her in a bubble and I wanted her to have a full, fun-filled productive life.
Right now as the world is social distancing because of the coronavirus, we are hunkering down as well. We have always washed our hands for 20 seconds and disinfected hand knobs. Having CF in our family makes us very aware of the dangers of coronavirus. We are trying to be extra cautious during this time and pray everyone stays safe in the “time of coronavirus”.
Through it all, she keeps us laughing and dancing. Lately, she has been practicing singing all the time because her dream is to be a singer like Meghan Trainor. She recently learned how to ride her bike and I’m having both my girls write snail mail to older people in our family since we are all quarantined. She loves getting snail mail back! She is a generous, kind, thoughtful girl who makes me appreciate how lucky a Mom I am, and one day I pray CF stands for Cure Found.
Thank you for letting me share my story.